Friday, July 31, 2015

Healing hands

Life is funny.  Well.  Not really.

I thought that I was struggling at home, fighting the reality that is now my life, only to find that our reality got a little more...uh...real, when Steven spiked a fever at one of his regularly scheduled appointments on Tuesday, scoring a re-admission to the hospital.

And the hospital, my friends, is where we "celebrated" his 42nd birthday on Wednesday and have spent each day since.  Apparently this year the place to be on your birthday is St. Louis.  More specifically, Barnes.


Today was rough.  Today I found myself lacking any sense of peace that I had thought I had secured.

The fever that Steven is running is now believed to be caused by the leukemia.  He had came home from the hospital in June on 80 mgs of prednisone to keep the Graft Vs Host disease in check.  Once home, the doctor, when noting that the blasts in his blood had increased, had decided to start backing off the steroid at a faster rate than we had been going, hoping the donor cells would kick in and help the outpatient chemo to do it's job.  

The steroid, as it turns out, was also masking a fever that he never broke during his last hospitalization, and the reduction of the steroid was enough to allow it to break through.

So now, Steven is battling a fever, a rapid heart rate (due to fever), and recurring Graft vs Host Disease.  


If the explanation of what is going on with Steven sounds complicated you can't even begin to imagine how complex the disease itself actually is.

And smart.

It learns how to adapt to survive chemo.  It learns how to adapt when you no longer eat.  It learns how to adapt to present itself as "safe" to your immune system.

It is smart enough to kill you.

A few people have offered advice and suggestions on things to do to aid in Steven's healing, and I appreciate their concern and their support.  However, some "advice" I have received has came from an individual that sadly is uninformed on the complexity of the issue at hand.  

And it is sad.

I can't imagine sitting at a computer and issuing medical advice to someone I don't know, about an issue I have no personal experience with, and shaming them for following a treatment prescribed by someone who has spent time and money educating themselves about this very disease. 

And, apparently, it may come as a surprise to some that not everything you read on the Internet is true.  

I love my husband.  You can't even imagine how much.  I fell in love with him when I first saw him. I was in the sixth grade.

No one wants him healed as much as I do.  

However, we have put our trust in God and our physician.  Jointly.  I truly believe that everyone we have been in contact with at the hospital wants my husband to beat this disease.  

God can use whatever avenue He wants to heal someone. For some, maybe it is divine intervention.  For others it is through the hands of the doctors and nurses. And for some, the healing doesn't happen on this earth.

However, I pray that Steven's healing is of this world and in this lifetime.  Regardless of your stance regarding modern medicine, the most beneficial thing you could do for our family is to pray for this too.


Manda said...

It's a shame she won't let up even after she's been asked. I'm so sorry. I know it is adding more stress to your already difficult situation.

Rachel Myers said...

I'm pretty sure God played a pretty big role in creating cures for diseases. How could modern medicine be considered anything but God healing us? Seriously. Kim, you and Steven are absolutely doing the right thing because it is what YOU and STEVEN have decided is best......not an ill-informed individual who has never met you and has a medical degree from Google.

Rachel Myers said...
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Ginger Bradshaw said...

Thanks for the update Kimberly, I pray so many times each day for you and your family. I think you are doing a great job in all area's. I wish that you could find more peace, sadly I know first hand how hard that is when we are so scared. My devotional the other night was about the "gifts" God has given each of us, As I believe we all have special gifts I also believe that God gives wisdom to the physicians, and with all advances in testing and medicine. We will continue to lift you up in prayer, ALL THE TIME for your whole family, the physicians and each person caring for Steven.

I am sad for you that someone feels the need to tell you what to do, we went through something similar with Doug and his heart trans. I know you moreso than anyone want your husband to be well. You hang in there, you are an amazing woman, mother and person.

God Bless you all.

Kristina Fishel said...
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Kristina Fishel said...

Kim, anyone who knows you well, knows you are doing everything you can to help Steven. I'm very sorry, and confused by the fact, that someone would "shame you" for following the advice of medical professionals. I believe God is working through the doctors and nurses. I know through your faith, and all of our prayers, you are doing just what you need to be. I'm sorry someone is making this journey even harder for you than it already is. We love you, and continue to pray.

John Farnsworth said...

You are one of the most amazing people I have the honor of knowing. You and Steven are a great team. I wish I had an answer to why this would happen to you both. But any person with any brains who knows you, knows you will research, read, learn, hope, pray and plead with every fiber of your being to make Steven well. Honey your faith has made you strong, and with that faith, God has given you the knowledge to trust and believe in the medical profession. Kim you stand brave and tall, do what you have to do and we that LOVE all of you will be right there with you. Tons of Love and Prayers to all of you.
Love Lois and John

Lindz said...

I'm just so sorry. You shouldn't have to deal with ANY added stress from anyone. ESPECIALLY someone who doesn't even know you. It's appalling that you even have to address this. We support you, we know and love you, and Steven knows you are "all-in." If all it took to fight this was to eat some more vegetables or lather yourself in essential oils, I'm pretty sure you'd be receiving shipments every second. From everyone. Stay strong.

Cinnomon Reed said...

Kim, thank you for sharing your family's journey with us. I feel like this can be healing , however I feel it has to be hard also. You guys are a little younger than me and even though I have known you for years I don't feel I know you like others do. However through your posts I feel I have gotten to know you better. There are thing that stand out to me and are consistent in every post. Your love for God, your faith in Him, that you pull your strength from Him, your unconditional love for each other and that your children are your world. If you pay attention to your posts there should never be a doubt that you want Steven to be healed! I pray this person leaves you guys alone, that God protects your hearts from the hurtful things that are being said and the way it has made you feel. I pray for renewed strength and peace.
Much love, hugs and continued prayers

Debbie said...
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Debbie said...

Kim, I am so sorry to hear that someone is giving you problems. It's ridiculous for anyone to think they know more about Steven's situation than you and Steven. I have followed you throughout this whole ordeal and know, without a doubt, that you are doing every thing possible for him. Please keep things in perspective. On one hand, you have ONE misguided, hateful stranger trying to tell you she is the only one who knows what's best for Steven. On the other hand you have HUNDREDS of friends who know and love you and have complete faith in you and in every decision you and Steven make. I know it's easier said than done, but you need to dismiss anything that ONE stranger has to say. With all my love, Debbie

Jackie Lance said...

My comment is very long and I split it into two comments to get it on here. I pray that you do not mind. You are a sweet, loving woman of God. Trust in Him always & He will give you peace. During my posts as Baby Wyatt's Nana, I learned that most people are loving & kind when things seem the darkest. But some people cannot see the pain their words inflict. I choose to believe they cannot see because I can’t fathom someone being so hurtful intentionally. I loved Wyatt with a love so great at times I felt my heart would burst. I KNEW in my heart that God had the power to heal him & he WOULD be healed either on the earth or in heaven. I had complete faith in Him & continue to have that same faith. When we were at Mercy Children’s Hospital in St Louis March of 2013, Wyatt was 3 months old. The doctor took us into a consultation room. I had not prepared myself for the words I was about to hear. They told us his C02 levels were at a critical level & he could pass very soon (5 min to a few days). It was devastating to hear. I hugged my baby girl & we prayed. I put a post on his FB page for prayer after notifying the family. We had a flood of people offering to pray on Wyatt's behalf. But “self-appointed” experts (their children had Ohtahara Syndrome) began to bash Stephanie & Levi. We were in a group of families for support dealing with OS & the majority were loving, kind people. However, there were some that felt they knew more than the doctors. OS is extremely rare & there are many variables to its severity. They criticized each decision. Stephanie received a text "Wyatt deserves parents who actually love him & are willing to fight for his life". Stephanie read this, fell to her knees weeping. She gave me her phone with a defeated look in her eyes as she asked, "How can anyone say things like this momma? I love my baby more than anyone could ever know". I felt a rush of anger, how dare anyone question the love she has for her baby. How could anyone think it was ok to say such hurtful cruel words? One woman wanted him to undergo surgery so we asked the doctors, their reply, “Surgery IS NOT an option for Wyatt”. Wyatt had a team of doctors 6-7. He was not assigned just one doctor he also had several specialists from around the world reviewing his case. These women were so quick to condemn my child for making decisions made by the highest educated doctors in the world. The problem with unsolicited advice is usually because someone does not have all of the information they need to make such a judgment call. If someone asks for advice give it freely with no expectation of the recipient feeling pressured to follow such advice. We received plenty of advice. If we chose to respond to that advice or report on it publicly was our decision. Advice should be given lovingly and gracefully NOT accusatory and with an angry tone. We received advice and we would bring it to the doctors for a response. They gave explanations as to why it would or would not be a good idea.

Jackie Lance said...

We blocked these negative people that treated us so harshly from our lives. We focused on God & prayer. We trusted the doctors God blessed us with. Wyatt's life may have been short but it was powerful & made a difference. We prayed for God to give us strength. He did. We prayed for Peace. He gave us peace. We prayed for a memorable moments in Wyatt's Life. Oh my goodness, He really delivered! Wyatt lived much longer than expected. We were blessed to have him for 10 glorious months! He experienced a life filled with more love & prayers than most people have in a lifetime. He was blessed with minimal hospital visits & much time with family. I believe that was a direct result of the prayers. Armed with the knowledge that each day could be his last, we were determined to make his life fulfilling. Struggles trying to understand God’s plan emerged so we went to our Father in prayer asking Him to reveal just a glimpse of how this situation could be used for good. He revealed in a mighty way. We suddenly received messages that told how Wyatt's story inspired them & their family in their walk with God drawing them nearer to Him. God IS using Wyatt’s story He is at work here. God used Wyatt's life to help us also. He taught us trust, faith, love, hope, forgiveness & the value of prayer, friends & family. Wyatt's FB page had approx 7K people following it.
Your story is touching lives also. Keep your eyes focused on God. Do not allow Satan to use insensitive people to bring bitterness into your heart. God has blessed his people with doctors and He uses them to heal every day. Our faith is not in the healing power of the doctors but the healing power Christ gives to them. He is The Great Physician. I will keep praying for healing for your sweet husband. I will continue prayers for the strength & peace of your loving family. God is using you. I pray that you continue using your story to reflect His great mercy & love.
*To anyone out there who thinks it’s a great idea to try to demean anyone going through such a trying time as this, keep it to yourself. It's a very dangerous game you are playing. NEVER accuse someone of not loving their family member or caring enough to do everything possible to help them. Someday you may find yourself in the same position & you will reflect on your behavior, then you will realize what you have done. *

angelismeforever said...
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Vicki said...

Kim, I am so sorry you are having to deal with someone who has NO idea what you and your family are going through. I'm praying you are able to ignore the "crazies" and keep doing what you are doing! You are an amazing woman of God and I KNOW you are doing exactly what God is wanting you to do!!!!

Lindz said...

Dear Anonymous Angela,
Let's remember that you are NOT her, and if you were, I hope your husband has control of his own healthcare. Unbelievable. Just in case you hadn't figured it out yet, YOU are who she was talking about. You should be ashamed of yourself. Have you even MET her? Do you sit at her table and listen to how hard she is trying and doing her best? I didn't think so. Here's a hint, if you are having to post anonymously, then you shouldn't be posting. Thank you for doing your part to add more stress and heartache to an already painful situation. Disgusted by you and feel sorry for anyone living with you. When you're dying of cancer, you can call the shots. Until then, you have no right. She should file harassment charges against you. I would.

Debbie said...
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Debbie said...

Lindz, you are so right! ANGELA, we have all heard your opinion and are tired of it!! YOU need to get a life, get off the computer, go take a walk, get some fresh air and LEAVE KIM ALONE!! I wish I could say to "go bother someone else for a while" but honestly, NO ONE deserves the abuse you are dishing out. You think you are "God's answer to all the prayers" but you are not! Everyone knows that but you! Kim, PLEASE report her so she can't do this to you or anyone else again.

Jackie Lance said...

It's ok to have your own opinion. That is a fact no one is disputing. When your opinion is given in regards to Steven's treatment the information could be considered and reviewed for its effectiveness. That is all you need to do. You do not need to continue monitoring Kim to verify if she is following your advice. You have given your opinion. She has heard you.
However, your comments which imply that Kim is not doing everything in her power to care for him are offensive and intrusive. This is what I am opposed to. It feels as if you are taking it upon yourself to judge others when you make comments like that. I understand that you are passionate about the method to a cure which you've presented and your opinion, but please do not let that passion drive you towards bullying tactics to FORCE it on her or to criticize her for not handling her affairs exactly like you would. I'm sure you are a very sweet caring person and as a sweet caring person I'm sure you would never intentionally hurt anyone. My prayer is that you may receive my words, not as a personal attack but with the love in which I write them. Please try to refrain from comments that wound others. You are in my prayers.

Anonymous said...

Forgiving hands, forgiving hearts. I'm so sorry for what you are going through. I think someone is trying to help but in the wrong way. It certainly doesn't help that he or she is on the attack by others. We never know what goes on in the lives of others or what prompts them to behave the way they do. I see two sides of every story. Perhaps everyone should. While we lift you and your family and friends in prayer for your husband's healing, let us raise ourselves as well for forgiveness of others and kind treatment of all despite their behaviors towards us. The Bible tells us not to argue with fools and to love our brothers and sisters in Christ.

Debbie said...

I would love to be forgiving of Angela but she has been asked to stop and refuses to do so. She was blocked for her comments on Facebook and then had several deleted from here. I'm sorry if she has problems in her life that makes her act the way she does but it still doesn't give her the right to treat someone else the way she has done. Kindness will be shown when she stops the harassment.